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Tuesday, July 31, 2018

Three ways of dealing with "Do what I want right this second!"

Janey's brother William is currently on an Amtrak headed to see his aunt Carrie, my sister.  He called this morning to Facetime with me, so he could show me the scenery and I could vicariously enjoy his trip.  However, Janey was in no mood for me to talk to him.  She wanted to go to the store.  She asked, and that quickly elevated to asking in a scream, and then plain screaming, and then trying hard to grab my phone away from me, and that failing, to jumping up and down in fury and biting her arm.  At that point, I told William I had to go.

This kind of scenario has happened a lot this summer.  Janey wants something.  She wants it RIGHT NOW.  She is furious not just if I have to say no, but if I say "in a few minutes" or "not right now".  I've been trying to figure out the best way to handle this kind of setup.  Here's a few of the possible ways...

1----Give in and do what she wants.  To be honest, this is what we've usually been doing for the last few years, as those who read this blog a lot probably realize.  After the horrible year that included the psychiatric hospital and then the medical hospital, both for long periods, we made a decision to make Janey's life as happy as we could by as often as we could having the answer to her wants be "yes".  It's not like we always said no before, but we had tried a more moderate approach.  The boys were younger then, and we hadn't yet quite embraces the philosophy that whatever gets us most quickly to a happy and calm Janey is the quickest route also to a happy and calm us.  Of course, there are things we can't do when she asked, but mostly, she seems to get this and just not ask for those things, like car rides in the middle of the night or salami when there is none in the house.  She asks for things she knows we can deliver, if we agree to, and we try to honor her requests.  It's worked pretty well, but this summer, it's wearing us down.  Maybe it's wearing ME down more, as this is one of the longest stretches I've had her all weekdays without any school.

2----Treat Janey as much as we can like any other almost 14 year old.  Say yes when it's reasonable, tell her to wait when she needs to wait, say no if we just don't want to give her what she wants to have or do what she wants to do.  In some ways, this was our old way of doing things.  It also goes with assuming competence, in a way.  We can assume she can learn in the natural way that sometimes you have to wait and something the answer is no.  It's what most people (especially without experiece with Janey's brand of autism) would see as the right answer.  It's what I always did with the boys, and I must say they responded well to it.  A no meant no.  They were not prone to begging or nagging.  I think I said yes often enough when I could that they learned I wasn't just saying no for no reason.  However, the 10 or so years that I tried to also use this method on Janey were, to be frank, a complete failure.  She was unhappy so much of the time, and she didn't learn, at all, what the boys  learned pretty easily---to be patient, to accept no as an answer.  We gave it a good trial.  If I thought it would work, I'd do it again. 

3---Use a hybrid method.  Accept that the way Janey sees the world and perceives the world and understands the world is not typical, no matter how much I presume competence.  But also realize that Tony and I are human beings, that we simply cannot always do what Janey wants, that the boys, although adult now, also deserve to get their ways sometimes, that we are worn down and tired out and need to figure out a way to keep going.  This hybrid method is what I'm starting to do more.  One part is not responding instantly to Janey.  Sometimes, even if I could do what she wanted right away, I say "Yes!  Just a minute, though..." and then I make her wait a minute.  I've done that approximately 10 times while writing this, the last right during the last sentence, when she asked the most common thing she asks---"Cuddle on the bed?"  Also, if she asks for something we will do in time but not for a while, I say yes and then give the timeline---for example, if she asks for a car ride at noon, I might say "Yes!  Daddy will give you a car ride when he gets home!"  He gets home about 5.  I only do that if it's something we WILL do that day---I'm not going to lie to her.  If the answer is just plain no, I say it but then offer a quick replacement.  If she asks for a ride and I know there will be no ride that day, I saw "No ride today, but we can talk a walk to the store right now!"  Or I say no and then quickly make us busy, so the no is a bit buried in whatever else we are doing.

In an ideal world, the #3 method would work.  I think it could work, not because Janey really will start to understand or accept delays or a plain no, but because waits or substitutes or distractions will become part of a routine, part of what she knows is a possible outcome when she asks for something.  The #2 method relies on an understanding of other people's needs and motives that I quite honestly don't see Janey having.  The #1 method relies on us as parents being responsive in a way that worked for a while, but that I think we are getting too old and tired to carry on, even if it did give us a few very nice years.  In reality, I don't know if method #3 will work.  It isn't working too well so far.  And perhaps there is some #4 method I'm not thinking of right now.  Whatever the solution is, or if there is a solution, as both Tony and I press further into our fifties, I think we need to figure it out.

Wednesday, July 25, 2018

A tough day and a scary news article---thoughts on respite

Today was one of those days.  Janey and I were both not in the best of moods.  I tried hard to keep her happy, and I'm sure she tried hard to be happy, but it didn't work out.  From my perspective, I spent hours doing exactly what she wanted---giving her the food she asked for, changing her TV shows, taking her for a car ride, snuggling with her---and then each time I didn't do exactly what she asked the minute she asked, she blew up and screamed at me.  I'm sure her perspective would be different, but I can only speak for sure about mine.  I felt tired, unappreciated, sick of it all.

And then I saw this news piece...  Read it here

But for the kindness of a stranger, this could have been a horrible tragedy.  As it is, it gives an answer, right there, to why I worry so much, why I sometimes give in to despair.  Here, in one of the riches countries in history, in a state with so many resources, THAT'S the best that is offered to care for people like Janey?  I have so many questions about how the man came to be alone on the very busy highway, but at the very, very least, there was some huge negligence going on, and by not reporting him for missing for as long as happened, I suspect some covering up, too.

My friend Michelle and I often joke back and forth with each other when we've had rough days (or weeks or months or years)---"I've got an idea!  Why don't you just get some respite?"  Then we laugh and laugh.  Because basically, there is next to no true respite available.  And when there is, well, that story above illustrates the fears I have of it.  It brought back flashbacks to the one respite I did try---you can read about there here if you wish.

Why is there so little respite, and why, when there IS a chance for there to be respite, or adult care, are there so many problems with it?

There's a few reasons, I think.  One is that unless you yourself have parented, long term, a child like Janey, a child with very little language who functions intellectually at about a toddler level, you don't really get it.  You might be as well meaning as the day is long, but you don't totally understand the EVERY SINGLE MINUTE part of the parenting.  There are no breaks, ever.  You can't let your attention slide.  This does two things.  Because people can't picture how all-consuming the job is, they don't understand why we NEED respite as much as we do.  And when people are hired to provide respite, or, bless them, volunteer to do respite, they often find themselves over their heads.  That was the case with the respite house we took Janey to.  They were hugely well meaning, they were well funded, they were a lovely place.  But they didn't get how much Janey (and other kids, I am sure, but I can only say for sure about Janey) needed to be watched.  

Another reason---our society doesn't value people who care for those with special needs very much.  We don't pay them enough, we don't train them enough, we don't screen them enough.  We as parents care for our children because we love them, because they are precious to us.  And even for us, it's too much sometimes.  I can't tell you how much I welcome Tony's arrival home every night, to give me a break.  I can't tell you how much I look forward to the school bus coming in the morning.  So, if someone else is caring for Janey, someone who is not her parent, I know it's a tough job.  I want that person to be well compensated, well trained and most absolutely well screened.  I want them to be valued, and to be treated as valued, but also I want them held to incredibly high standards.

The third reason is a dark one.  I truly believe most people are very good people.  But some people aren't.  And those people are sometimes drawn to people like Janey, who don't communicate well.  That is a horrible, everlasting fear of mine---that rare kind of person.  Or less evilly, some people snap when they lose patience.  Or simply tune out. Whatever happened the other day with the autistic man in the article---someone "caring" for him either did something cruel and evil, or someone lost patience, or someone tuned out.  And in cases like this, or the case of the many of us with children similar to Janey---well, there can be some very horrible endings.  Or horrible happenings that we never do find out about, because our children can't tell us.  And that, my friends, is why, even in those rare cases where there is respite, or as I look to the future, when Janey needs adult care, I don't have a lot of trust or a lot of hope.  Or a lot of answers.

Thursday, July 19, 2018

Summer without summer school

A couple days ago, it occurred to me I'd barely thought about the fact that Janey wasn't in summer school.  It wasn't just that I didn't regret my decision not to send her---I barely remembered that usually she has gone. 

It's not that everything is perfect, but more that summer school always seemed to add more stress than it took away.  The first day, the bus showed up, although I'd sent back two forms saying she wasn't going, and also answered an automated phone call that way.  That shows about how organized summer school is.  The bus honked---45 minutes after the time the form I'd received (also after saying over and over she wasn't going) said the bus would get there.  I pictured the other summers, waiting out in the hot air for a bus that took forever to come, trying so hard to convince Janey not to go back inside and take off her shoes, trying to keep her calm and not screaming.  And then when she got home in the afternoon, dealing with her being very unhappy, most likely due to a program that just wasn't good.  And getting calls like the one I did last summer, from the only teacher so far I've ever encountered in the Boston schools that just didn't seem to like Janey, asking me if I had any ideas for keeping her from crying all day.  I did have an idea---and it was to take her out of summer school for the rest of the summer.  Next year, I'll try again, as Janey will be in a different program then, a pre-high school one (hard to believe).  But for now, I am quite sure I made the right decision.

What have we been doing?  Not as much as I planned to, as always.  I've tried to get Janey out of the house some every day, and mostly, we have---maybe not to exciting places, but to stores or fast food or errands.  We also do our daily walk to the "ice cream store" for chips.  We play outside after that walk.  Up until this week, Janey was napping a fair amount (and still sleeping at night).  She needs a lot of sleep, and I don't think she always gets as much as she needs during the school year, despite a bedtime of 7pm (which is her choice---not one we enforce!)  She watches plenty of videos, and we snuggle a lot.

The thing we've been doing I love the most is reading.  I've always read to Janey, of course---books are my life, and I love to read aloud to my kids.  But Janey didn't always want to hear what I had to read, or she just wanted the same book over and over and over until I couldn't take it any more.  Her teacher told me about a way she had been getting Janey to pick books and listen to them more, and I have been using a modified version of that.  I pick out three books I'd like to read to her, and ask her which one she wants.  She picks one, I read it, and then I set it aside and show her the other two, and ask again.  I read her next choice, and then lastly read the third one without asking.  Usually she doesn't want to hear all of the third one, which is fine, but sometimes she does.  Then I ask her if she wants any of them again, and often she re-picks the first choice.  Then I put the books back on the shelf.

Today I tried something new---reading her a chapter book.  I picked "Betsy-Tacy" by Maud Hart Lovelace, one of my favorite books and the start of a great series.  She listened a bit, and then did something that I loved.  She said "I want...I want...bones!  Bad!"  I knew right away what she meant.  She wanted to hear a book we've been reading a lot, "Katie Loves the Kittens" by John Himmelman.  The cool thing is that the book is about a dog, but doesn't have a bone or the word bone in it, and Katie the Dog is a little naughty, but no-one calls her bad.  Janey just picked the words to describe the book that related to it---"bone" for a dog and "bad" for how Katie scares the kittens by mistake!  It's very rare Janey forms a totally new request like that, one that shows she understood the book and wanted it enough to work hard to tell me what she wanted!

We've had our share of tough times, of course.  One day, Janey had been napping and Freddy and I were watching something on TV.  When Janey woke up, she wanted her own show and she wanted it RIGHT NOW.  I told her she could watch it when we were done, and she started screaming.  I said "You know, Janey, you are being a little selfish"  Evidently, that was not good for me to say.  Janey screamed loudly for a long time.  I gave her a shower, which usually calms her down, but it didn't, this time.  Then I snuggled on the bed with her, with some screaming still going on.  I did what a do a lot---tried to give her words for what she was feeling.  I said "You know, it's okay if you want to say 'I am very angry at you, Mama!  I didn't like what you did, Mama!' You can even say 'I hate you, Mama!''

Well, that is just what she did want to say, I guess.  She immediately said "I hate you, Mama!"  She said it like she meant it, and I am pretty sure she did.  Then she said it about five more times, in an ice cold, angry voice.

I had a mixture of emotions.  I was very glad she was expressing how she felt!  But at the same time, it was something I've never really heard from her before, and I'm pretty sure never from the boys (there seems to be less of that kind of drama with boys!)  It surprised me that I felt hurt---but that is part of being a mother, especially of a teenaged girl, and it's part of how Janey is in many ways no different than any other 13 year old, especially when they are spending large amounts of time with their mother.

Most of the time, though, Janey still seems to like me fairly well, and although some days I'm quite (extremely) glad to see Tony coming home from work so I can collapse for a while, we are getting through the summer in pretty good form.  I hope Janey would agree with me.

Tuesday, July 10, 2018

Janey in Lists

Things Janey loves to eat

Juice from the pickle jar
Spaghetti sauce
Boiled greens
Cheddar cheese---must be freshly cut from a big block
Cherry tomatoes
Onions with the skin on

Movies Janey likes

The Spongebob Movie
The Little Mermaid 2
Care Bears---Journey to Joke-a-Lot

Janey's biggest talents

Remembering tunes and lyrics of songs
Smiling in a way that lights up a room
Her sense of humor
Her beauty inside and out
The special way she has of uniquely connecting to each person she loves

The most frustrating things about Janey

When she screams and we can't figure out why
That she isn't fully toilet trained
When she bites her arm
How upset she gets when one time out of a hundred, we insist on watching our own TV shows
Her utter lack of patience

Janey's favorite things to do

Car rides
Rearranging furniture
Rearranging cats

The toughest parts of being Janey's parent

The need to absolutely constantly be on alert
The tiredness when she doesn't sleep
Cleaning up difficult messes
The very loud screaming
Over ten years of the same TV shows

The best parts of life with Janey

Seeing her happy
How often she makes us laugh with her
The many, many times she surprises us with what she says and does
The wonderful people I've met that I wouldn't know if I didn't have her
How she brings our family together

Janey's favorite music

The Beatles
Toby Keith
Christmas music
Black Sabbath
Meat Loaf
Weird Al
The Ventures
Nursery rhymes
Show tunes

Janey's most said phrases

"Snuggle on Mama's bed?"
"Want to take a shower?"
"Go for a car ride?"
"Want to go away?"
"Go to the ice cream store?"

Things Janey hates

Hair brushing
Coming home after a car ride
People saying "just a minute!"
Cats that keep coming back after they are rearranged
Being out of cheese

Things I think Janey could do if I could figure out how to unlock the keys

Use remotes
Access much of her vocabulary
Consistently use the bathroom
Sleep on a regular schedule

My biggest fears regarding Janey

That someone will hurt her when I'm not there to protect her
That she get sick and not be able to tell me what is wrong
That she will somehow get lost
That when I someday die, she won't understand why I left her
That when I am gone, she will not be taken care of